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Phil 😻 | Vulvodynia patient advocate 👄 BA Oxon

@painsdownthere

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Vulvodynia • thrush-induced vestibulodynia • chronic pain 🔥 Getting women & doctors to take thrush seriously 🔥Award-winning women’s health campaigner

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Most people in my life know that I do not shower like a regular person. I wanted to talk about what I do use to stay hygienic.

1. I use adult body wipes and rinse free foam to stay clean. I use the wipes to clean up my entire body once and then clean up again using the wipes a 2nd time but with the foam. This allows me to pick up the oil and dirt from my body and then go back over it to help me smell better. I use witch hazel and lidocaine wipes to clean my vulvar areas. This numbs me and keeps flareing pain to a minimum.

2. If I am able to I can try to take a cold bath and then a quick up to 5 minute shower to wash my hair and rinse off any left over dead skin. I try to use a more abrasive sponge to make sure I get as clean as possible. I try to plan this around my next dose of pain meds and take it going from bath to shower to hope I have the least pain possible. I use shampoo & conditioner combo and try for things like head and shoulders or selsun blue. This allows my scalp to get as clean as possible. I don't have the time to thoroughly clean AND condition so this is my best option. This method is my favorite. I feel the cleanest and I can typically handle it once a week especially if I have care for my daughter.

3. The quickest method but most painful is taking a regular shower. I absolutely cannot handle this more than once a month. I try to avoid it if at all possible. I have to do this the night before my husband has a day off of work , If I must do this I try to plan it for the Friday night before he has an entire weekend off. I have to set an alarm because if I accidentally take a shower longer than 15 minutes I will likely end up in the hospital a day or two later with exasperated in relenting pain. My pain usually is delayed and happens the next day or two but if I stay in long enough that I start hurting mid shower I am typically in big trouble.

If you have a person with a rare pain condition, especially if this is new for them please share this with them. Please remember hygiene isn't always easy or attainable.

#chronicpain
#pelvicpain
#shower
#hygiene
#newnormal

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Research has found that vulvodynia can affect working life, with women reporting missed work and a negative impact on their ability to work.

So what happens when your workplace isn't designed around a condition that people can't see?

Chronic pain shouldn't have to be visible before it is believed.

The petition calls for gynaecological conditions to be explicitly recognised in the Equality Act 2010 Guidance as impairments with fluctuating or recurring effects, helping to improve awareness of the potential impact of these conditions and the support people may need.

Let's make workplaces more understanding of women's health.

Sign the petition before 27 September 2026.

Link in bio 😊

#Vulvodynia #AConditionADay #SANJU #WomensHealth #EqualityAct #EndoTheInjustice

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📌 Save this post for the next time painsomnia strikes.

Between pelvic pain and a nervous system on high alert, ‘painsomnia’ leaves so many of us exhausted before the next day even begins. 🎗️⚡

Instead of trying to “force” sleep when my body is in endo flare mode, I’ve been focusing on soothing my nervous system first. Adding a few gentle sensory tools to my bedtime routine has made flare nights a lot more manageable. 🌙

If you’re looking to try any of these for your own wind-down routine, you can use code ENDO10 for 10% off your order @dozurasleep https://dozura.co.uk/endo10

💬 How many hours of sleep do you usually manage during a bad flare? Let’s talk in the comments!

#insomnia #gifted #endometriosis

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We are back at @karnivalmania mas camp tomorrow
Please share our survey 🙏🏽💖

NO FLOW LEFT BEHIND 💚
Initiative and survey

Your Voice Matters.

From our Founder @natblake_endowarrior’s personal experience of navigating heavy, painful periods while taking part in Carnival, to being diagnosed with PMOS, followed by Endometriosis, Adenomyosis, Fibroids, Fibromyalgia and Ovarian Cysts, and now navigating perimenopause.
Natalie wants to help improve the support, awareness and resources available for menstrual and hormonal health and debilitating conditions at Notting Hill Carnival and beyond.

But we need YOUR voice.

Our call to action is simple: help us make sure we’re advocating for the right services, support and resources for the community.

Please take a few minutes to complete our short survey so we can better understand and accurately represent your needs.
🔗 Link in bio or https://shorturl.at/lINHl
🎁 TWO PRIZES UP FOR GRABS!
🏆 One lucky winner will receive a year’s supply of Flo products + two pairs of period pants worth £100.
🏆 Another lucky winner will receive a Doctor Seaweed supplement bundle to support hormonal health.

Goal = 1000 completed surveys

If you would like to support or get involved please DM us 💚

A huge thank you to our amazing sponsors and supporters:
@hereweflo
@karnivalmania
@goddessglamlounge
@doctorseaweed

Your experience matters. Your voice matters. Let’s make sure no flow is left behind. 💚

#NoFlowLeftBehind #SundaySip #NottingHillCarnival #MenstrualHealth #hormonalhealth

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Pain is about the person. The whole person.

This is particularly important when we think about endometriosis.

Pain is not simply about one organ.
Or one body system.
Or the brain.
Or the nervous system.

It emerges from the whole person, through many interacting systems, within the context of their life.

Research into endometriosis is increasingly showing this complexity.

Hormones, inflammation, immune activity, nerves and changes in sensitivity can all be involved. These processes interact with each other — and with everything else happening in a person’s life.

This helps us understand why treating endometriosis itself does not always resolve the pain.

And why good care must involve more than asking, “Where is the pain coming from?”

We also need to ask:

What is happening for this person?
What is contributing to their pain now?
What do they need?

Complexity can sound daunting.

But it also creates opportunity.

Because when there are many things influencing how you feel, there are potentially many things we can work with.

Not quick fixes.
Not promises that everything will be fine.
And certainly not suggesting that you simply need to think positively.

Instead, we listen. We understand. We treat what needs treating. And together, we find meaningful ways to help you move towards the life you want to live.

The condition matters.
The biology matters.
But most of all, the person matters.

With care,
Richmond 🕊️🌿
Multidisciplinary Pain Specialist

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After a two-month thrush infection led to two years of pain and fighting for answers, Philly got her diagnosis: vulvodynia [vulva pain of no known cause]. Then came the psychological processing of a condition with no known cure...

"It's massively stalled my career, my income and I’ve had to move back in with my parents to be my full-time carers during flare ups. Gone are my dreams of having a baby with my husband, who I’d only just married weeks after receiving my diagnosis. Gone are the six-figure job opportunities I’d spent my whole life building towards."

"Looking back at my decline, there were so many opportunities to have prevented this. Getting thrush 10 times in 10 years certainly isn't normal, and yet I had no recourse to a specialist as I was under the threshold of recurrent thrush (4+ infections over a year). Just a warning on the NHS thrush page that a severe infection is a known causal event for triggering vulval nerve damage could have supported me in taking my propensity for thrush seriously.

"Awareness of the difference between a gynaecologist and a vulval clinic could have allowed me to get a correct diagnosis sooner. I may have fully recovered even. If I had got to a vulval clinic sooner, I might never have gone to a gyno who misdiagnosed me.

"Better prevention and better care for vulvodynia patients begins when we learn from patient experiences. And so the research supported by Wellbeing of Women is a massive beacon of hope. Pain no longer feels so painful when, at least, there’s a purpose to it.

"We’ve got to make vulvodynia diagnoses far quicker to improve outcomes. And vulval pain warriors deserve compassion rather than disregard. Medicine is moving in the right direction and change will come – especially when research pays vulvodynia the lip service it deserves."

By entering the @omazeuk Cornwall House draw, you'll be supporting women like Philly, helping to fund groundbreaking research and powering breakthroughs in women's health. Enter now 💜

Visit omaze.co.uk. No purchase necessary. UK residents and over 18s only. Car [and cash] closes 16/08. House closes 31/08.

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I want to say a huge thank you to Natalie Meagan‑Blake, advocate for Endometriosis, Adenomyosis, Fibroids and PCOS, and founder of Sunday Sip Live, for hosting such an intimate meet and greet with Lauren Kornegay, founder of Endo Black Inc, supporting African American women living with Endometriosis.

It was an evening of connection, conversation, and community at The Good Front Room, and I met some incredible women doing powerful work in this space.

Susan, Co‑founder of Here We Flo, creating organic cotton period‑care products.

Kennedy Jopson, a London‑based American actor, writer and voice artist working in new writing and political theatre.

Gina, founder of Ebony Bonds Bereavement Support, supporting Black families navigating pregnancy and baby loss.

Phil, Vulvodynia patient advocate. Getting women and doctors to take thrush induced vestibulodynia seriously.

Donna, Sunday Sip member and supporting women's health

Our experiences may differ, but they echo one another. We advocate for women’s health in the moments where it goes unheard. We build spaces where like minded women can connect, be understood, and work together to close the gaps in a system that often overlooks us.

These spaces matter, especially when the journey can feel isolating.

Representation is not optional; it is essential.

I’m deeply grateful to Natalie for reminding me why these spaces exist, and why I continue to do what I do.

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Vulvodynia can affect far more than one part of your body.

Sitting.
Clothing.
Movement.
Sex.
Intimacy.
Relationships.
Confidence.
How you feel about yourself.

And still, many women are left feeling unheard, confused, or frightened that nothing can change.

In this new episode of Pain Talking, Dr Angela and I explore vulvodynia with honesty, care and hope.

Angela brings her experience as a doctor, menopause specialist and clinical sexologist.

I bring my background as a multidisciplinary pain specialist.

We have both worked with women experiencing vulvodynia and share our interrelated perspectives.

Together, we look beyond a label or single treatment to consider the whole woman:

The biology.
Hormones.
Pain and protection.
Pelvic-floor tension.
Sex and intimacy.
Past experiences.
Relationships.
And the practical ways forward.

Your pain is real.

You are not broken.

And there may be more possibilities than you have been led to believe.

This episode is for women living with vulvodynia, and for the clinicians and therapists who want to understand and help them more fully.

Listen via the link in my bio.

Send us your questions.

Please share it with someone who needs to hear this.

With care,
Richmond 🕊️🌿
Multidisciplinary Pain Specialist

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Catch us at @demisantanabrown Community Fun Day to celebrate Mick Northwood life and legacy @longlane_jfc.
We are so excited to support and be part of this monumental event, it’s going to be an incredible day!
Thank you @demisantanabrown for your continuous support 🤩👑🫶🏽

Reshare• @demisantanabrown Two weeks to go until we come together to celebrate the life and legacy of Mick Northwood. 💙⚽️

A day for football, family, community and remembering someone who gave so much to grassroots football.

Swipe through for the full event breakdown, venue map and all the amazing vendors joining us on the day.

We can’t wait to welcome you, share memories, and create some new ones together. See you there! 💙

#MickNorthwood #CommunityFunDay #GrassrootsFootball LongLaneJFC Community FamilyFunDay

Schedule of the day 💙

Free entry

You will be updated throughout the day if any changes occur 📣

Map of facilities, amenities and zones 🙌🏽

Feel free to bring picnic blankets 🧺

You can also bring water guns and a change of clothes if you wish to take part in water fight in zone 5 from 3pm

Some of our amazing vendors 🙌🏽

Plenty of games and prizes to be won throughout the day

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Our founder, @natblake_endowarrior was honoured and privilege to be asked to deliver a talk on Women’s Health at the independent Windrush Festival presented by the grassroots @radiatefestival.
To be there celebrating and honouring the Windrush generation, keeping stories alive, celebrating our culture, heritage made the day even more special. ❤️

The whole day was filled with amazing vibes, music, food, drinks, family, and community. It was such a warm and supportive atmosphere and it was beautiful to see so many people coming together.

During @natblake_endowarrior @_shetalks_ talk the conversations were open, honest and continued long after the talk had ended, with people stopping by to share their stories, congratulating, and to ask questions and seek supportive advice from the amazing @_shetalks_ .
Shout out to the men that joined us!

Thank you to @awomanschoice and @mummyendoandme for being part of this and sharing your published books and the story behind why you wrote them and the importance of communication.

@wendyradiates thank you for untrusting in us, and creating such an incredible important festival independently 🫡👏🏽

A special mention to Natalie’s Dad for being there to support her too. Being able to spend Father’s Day with him made it even more special ♥️

It was such an honour for Natalie and her Dad and to meet, run joke and mark this with a photo, Mr Joe Douglas, a radio pioneer who founded the UK’s first legal Black radio station, WNK - Worth Not Knowledge.
Through his pioneering platform Joe Douglas collaborated with Lee Bailey founder of Black History Month in the USA, and brought Black History Month to the UK through using his platform radio station to broadcast historic Black stories and host community celebrations. We thank you 🫡 @missscardoug

Left with more ideas lol, more connections, more inspiration and even more confidence that Sunday Sip work is needed regardless of how small others view it, we need to remember -

‘Wi likkle but wi tallawah!’.

This truly felt like the first of many, and we already can’t wait for next year. ✨

We raised £65 for our MHD 🎉 link in bio
Barbados 🇧🇧
Jamaica 🇯🇲
St.Lucia 🇱🇨

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A fantastic day at the @theeverywomanfestival !
Shout out to @julie.cornish and the whole team for creating a fab space for health and advocacy.

Really enjoyed speaking about breast health and menopause alongside the brilliant @askanushka , connecting with inspiring colleagues and meeting so many engaged women passionate about their health. 💜

Days like this remind me of the power of education, advocacy, and community in improving women’s health outcomes. 🙌🏽

Particular highlight for me was meeting @painsdownthere and @theangryuterusclub as well as Jinty and Lou from @womenkindcollective

Feeling hopeful, energised, and excited for the work ahead! 🌟

Really enjoyed catching up with:
@neelamheerashergill
@talkswithdrsesay
@mollfenton
@dritunu
@peony.lht
@dr_mezaref
@womankindcollective
@theobgynmum
@doctorsgetcancertoo
@shakira.akabusi
@kreenadhiman
@sewgical_endeavours
@geeta_nayar1
@dawn_heels
@zaynahreports
@hormoneequilibrium
@feelgoodwithlavina
@aaishaopel
@natracare
@indisupplements

#EveryWomanFestival #WomensHealth #Menopause #BreastHealth HealthEducation

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